From Advocacy to Action: How One Family’s Experience Inspired a Nonprofit

This is part of our series reflecting on 20 years of Family Advocacy Day. Learn how the experience impacted our former child advocates.

Family Advocacy Day was a pivotal moment for the Hines family.

“When we came home from D.C., we were on fire and ready to advocate,” said LaKeesha Hines, who participated in the Children’s Hospital Association’s annual event.

She and husband Willie Hines say they felt energized sharing their son Braelyn’s story with policymakers — and less alone at gatherings with families like theirs who have children with complex medical conditions.

“Everywhere you go, you always feel like you’re by yourself. So it was amazing to walk into a room and just know they get it,” Willie said. “And it was refreshing to see families all out there advocating for the same things.”

That was in 2010. In 2011, the couple founded Support4Caregivers.

“Going to Family Advocacy Day was 100% a catalyst for us starting the nonprofit,” LaKeesha said.

A labor of love

As part of the nonprofit, the couple leads a monthly support group for caregivers at St. Joseph’s Children’s Hospital, where Braelyn, now 21, has been a patient since he was 5 months old.

Braelyn with his family.

“It’s truly a blessing to be able to help caregivers so they don’t have to go through some of the pitfalls we’ve been through,” LaKeesha said.

Through this labor of love, as Willie calls it, they help parents prioritize their well-being, find therapists, and get respite by raising money for their kids to go to a camp for medically complex children.

They've also invited professionals to support group meetings to help caregivers navigate the financial, legal, medical, and educational systems.

And their enthusiasm has inspired three families in the group to participate in Family Advocacy Day.

“We tell them ‘whatever it takes for you to get there, it is so worth it’,” LaKeesha said. “It’s an experience like no other – one we will never forget.”

Lending their voice

They said they’re still proud of sharing their story on Capitol Hill 15 years later. And they’ve taken lessons learned in D.C. to advocate at the state level.

“Braelyn can’t speak, so we have to be his voice,” Willie said.

He was a joyful baby, always giggling and interacting with his big brother. But at 5 months old, Braelyn contracted bacterial meningitis, causing two strokes, continuous seizures, and fluid on his brain. After six weeks in the hospital, the couple said they took home a different baby, one who couldn’t make a sound and needed around-the-clock care.

For years, Braelyn also couldn’t move. But when he was 6 – shortly before they traveled to Family Advocacy Day – Braelyn pulled himself up on his walker and took his first steps.

“It’s important that [legislators] know how the decisions they make impact our son and family and other families with unique and complex needs,” Willie said. “We know we might not see results today, but it will impact tomorrow. You’re not doing it for yourself. You’re doing it for those behind you.”

That’s why the Hines family prioritized sharing their experiences with Medicaid.

“There’s a stigma attached. People think Medicaid recipients are low-income,” Willie said. “But there are a lot of people like us caught in the middle because we don’t make enough to cover Braelyn’s medical expenses, but we make too much to qualify for some Medicaid services.”

The family lost private insurance coverage once and learned just one of Braelyn’s seizure pills was $800 a month.

“We work hard. We’ve done well. We don’t want handouts,” Willie said. “But there is no way we would have been able to afford the care Braelyn needed to get him to where he is today without Medicaid.”

They’re happy to offer advice to caregivers in their support group preparing for Family Advocacy Day.

LaKeesha tells them there’s no need to be nervous meeting with legislators.

“Just be your authentic self, and they will really feel where your heart is,” she says. “That’s what will help them remember your child when they take a vote.”

Willie’s insider tips are more practical: “Eat your Wheaties, drink lots of water, and wear comfortable shoes,” he says. “It’s a lot of talking, moving, and shaking. And it really is amazing.”

Today, Braelyn has the most infectious laugh, loves water therapy, and qualifies for Medicaid as an adult, easing his parents’ worries about their private insurance covering his needs and allowing LaKeesha to work full-time for the first time since he was a baby.

About Family Advocacy Day

The Children’s Hospital Association is celebrating its 20th year of hosting Family Advocacy Day. Each summer, patients and their loved ones meet with federal lawmakers in Washington D.C. Together with children’s hospitals, we elevate their voices and advocate on important pediatric health care issues.